Mayo Starts to Shine – Day 2

October 20, 2010

Exhausted. That pretty much sums up today for Katy and for us.

Two straight nights of sleep deprivation – last night purposefully done, the night before caused by a fit of coughing – have left all three of us wiped out. But not before the power of the Mayo Clinic started to show through today.

Let’s just say today was a good day. A long day. But a good day.

We started again before 5 am, getting Katy up LONG before she wanted to this time. We woke her up the same way we did the last time we were going to do an EEG – early morning bath time! By the time we reached the neurology department at 7:30, Katy unfortunately was starting to show signs of waking up a little more than we had hoped. She was obviously still tired, but would she be tired enough?

Thankfully, the process that Mayo uses for EEGs is a little less messy than what we’ve gone through in St. Louis. The reason? Instead of attaching I don’t know how many electrodes to her head with this sticky gunk they put on her scalp, here, they just put on a small green cap with all the electrodes already attached to it. Yes, they had to put some sticky stuff through the holes of the electrodes for conductivity, but still, it wasn’t even a tenth of the mess I dealt with the last two times we went through this. Getting her to sleep was another story, however. The reason? Katy was too interested in what the technicians were doing over at their computer. I called her “inquisitive.” Michele says she’s “nosy.” Either way, it amounted to a lot of time spent sitting in a chair with a supposed-to-be-sleeping little girl.

So, we skipped ahead to the “awake” portion of the EEG which consists of measuring her brain waves while she reads a book and looks at a couple of pictures. Then on to the piece de resistance – the strobe light! Thankfully, Katy thought it was funny, and more importantly, it did not send her into any sort of seizure (at least not visibly). With that done, we suggested that they turn the lights all the way down, turn off the music and get Katy faced away from them. Voila! She was out in less than 10 minutes. No sedation needed!

Next, on to urology, where the doctors agreed with every step we’ve taken so far. (Score one for Dr. Palagiri at Cardinal Glennon in St. Louis!)

Then, up to visit with an occupational therapist in the pediatrics section of the Clinic. Here is where things really got interesting for us.

A couple of notes: first of all, by this time it’s 1 pm. Katy is going on about 7 hours of sleep. She’s been poked and prodded for the whole day already and now we’re expecting her to work with an occupational therapist. We weren’t expecting much. We were just hoping to have her see as many people as possible while we were there. And for the first 20 minutes or so, she did a pretty darn good job of living up to our expectations on this one. And then, suddenly, things began to change. First, the therapist – Joan – with the aid of a little plastic add-on to a pencil, got Katy to use a regular grip while drawing. Never seen that before. Next, while discussing the topic of brushing teeth, the therapist – Joan – asked if we had ever used any sort of toys or tools that vibrate with Katy. Not really. Well, evidently, the sensation can help with children who have hypersensitivity in and around their mouths. Two toys later and Katy is brushing her teeth and her tongue with a small electric toothbrush. Holy Cr@p! Shel and I are slightly stunned at this point.

It gets better. We move on to physical therapy with Terry. Katy was decidedly uncooperative by this point, but Terry was wonderful at taking the time to ask Shel and I about are concerns. The age-old issue of Katy’s right ankle came to the forefront again. Here’s where things became even more interesting. To start with, it looks like my “exercises” with Katy’s foot may not have been completely successful. While her ankle does not lock itself into the same twisted position like it did before, I had noticed a problem, myself over the past couple of months. While pushing on the sole of her foot with almost all my strength, I could barely get her foot to move towards her shin. Terry noticed the same thing. She asks if we’re seeing a physiatrist while we’re at Mayo. What the hell is a physiatrist, I want to ask. (And no, we’re not scheduled to see one.) A physiatrist – also known as a rehabilitation physician – is a medical physician who are experts at restoring maximum function lost through injury, illness, or – get this – disabling conditions (among other things). I’m beginning to wonder why I’ve never heard of this before. After working with Katy some more, Terry goes to see if there’s any chance we might be able to get on the schedule for tomorrow. Nope. No chance. Everyone is booked. We’re disappointed but completely understand. So, Terry goes to get a bunch of information for us and some contacts for us to make when we get back to St. Louis. I go to sign the release forms for her to talk about Katy’s condition with our hospitals in St. Louis and suddenly we’re talking with the physiatrist on duty tomorrow. Just like that, we’re on the docket for 11 am tomorrow. Holy Cr@p! This is why people talk about Mayo Clinic in almost reverential tones.

So, our day off tomorrow is no longer a day off… and I could care less. Shel and I are extremely grateful – and excited – to go back to the 16th floor to the Department of Physical Medicine and Rehabilitation. (Katy may disagree with this last sentence.)

Hopefully more news tomorrow. I’m wiped out.

todd

{ 7 comments… read them below or add one }

laura morgan October 22, 2010 at 6:30 am

Im glad things are going good up there. They do amazing things and Katy is an amazing girl!

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Todd October 24, 2010 at 6:31 pm

Thanks, Laura, for checking in with us! It was an amazing experience.

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Susan Stephens October 22, 2010 at 11:40 pm

Todd you are a great writer!

There are so many that read your updates that do not post comments. It’s great to read the updates,,, it’s Friday and I can’t wait to hear what’s happened on the past few days.

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Todd October 24, 2010 at 6:32 pm

Well, thanks for buttering me up with the compliment, Susan! Sorry about not getting anything up right away. Our internet connection was horrible our last few days there. I’m going to be posting video shortly.

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Carrie McGuire October 23, 2010 at 1:56 pm

I am so proud of you both and all that you are doing for Katy and other families with that deletion. I pray for Katy all the time and I also pray for you both. Brigid is a text book Mylomenogocle (spina bifida) child. Even though every child with SB has different issues we have a point of reference and and future outlook for her. It is due to the parent’s like you and Michelle that made it possible. Keep up your fight and your advocacy for her it will someday not only help Katy but other families. God Bless! Have a safe trip back home.

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Todd October 24, 2010 at 6:41 pm

Carrie- Thanks for your kind words. We appreciate all the support we can get. All we’re trying to do is get as much information out there about Katy to as many people as we can. Hopefully, someday, someone will see something here that may just help our little girl.

Thanks again,
todd

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Elizabeth McPherson October 26, 2010 at 8:55 am

I have the same oral difficulties with Evan too, and our OT just recommended the vibrating toothbrush.. How on EARTH did we not think of this before!? I’m so glad you guys had a successful trip! And I love hearing about all the little details and information you were able to obtain! Thanks for sharing!

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